Monday, December 29, 2008

I seeking sponsorship of my 2009 MS Walk fundraising campaign. Multiple Sclerosis and its effects have had a significant impact on my personal network. Having Multiple Sclerosis has limited my normal contacts primarily to persons dealing with chronic diseases and disabilities. Fundraising among that demographic is difficult at best.I am devoting myself to causes for the disabled with particular emphasis on issues relating to Multiple Sclerosis. As a result I am currently serving in the following volunteer capacities: 1. Governor’s Office of Emergency Services SEMS (Standardized Emergency Management System) Specialist Committee for Volunteer Services

Tuesday, November 11, 2008

I received the following in an email this morning from a fellow veteran with whom I served 40 years ago during the Vietnam era.

We still maintain a fairly extensive mailing list of those that served with us and several of the guys have taken it upon themselves to maintain a database of our locations and contact information.

The email I received read as follows:

Roster update

For all of you who knew Lino Celli I have some bad news. Lino passed away last week at his home in Italy. He had MS for many years and the toll of the long and ugly road called him home. I spent last week with his wife assisting her getting affairs in order. Please pray for Rita and their daughters in these difficult times.

Saturday, November 01, 2008

Two teams of researchers funded by the National MS Society have reported findings on nerve tissue injury and repair that add important information needed to stop MS progression and develop nervous system repair strategies. Isobel Scarisbrick, PhD (Mayo Clinic and Foundation, Rochester, MN) and colleagues have found two enzymes that may serve as markers of progressive MS and nerve fiber injury. Patrizia Casaccia, MD, PhD (Mount Sinai School of Medicine, New York) and colleagues reported that another enzyme is essential for replenishing myelin-making cells that have been depleted by MS. Both teams are continuing these lines of research in hopes of identifying targets for the development of new therapies for MS.

Dr. Scarisbrick reported her team’s findings related to MS progression at the annual meeting of the American Neurological Association (Abstract T-99). Dr. Casaccia’s report on the enzyme critical for repair appeared in Nature Neuroscience (early online publication, August 24, 2008).

Progressive MS and KLK enzymes (Dr. Scarisbrick’s team): Understanding the processes that lead to tissue damage in MS is crucial to feed parallel efforts to protect and repair the brain and spinal cord. Dr. Scarisbrick previously found elevated levels of “KLK6” (a newly identified member of the kallikrein enzyme family) in areas of damage found in tissue samples from people with MS. Now, in a follow-up study, the group has studied the levels of KLK6 and other kallikreins in blood samples taken from 35 people with different clinical courses of MS and 62 controls without MS.

The results show that KLK1 and KLK6 were elevated in people with MS, with the highest levels appearing in people with secondary-progressive MS (a course of MS that initially is relapsing-remitting and then becomes progressive, with or without occasional relapses and minor remissions).

The team also exposed nerve cells isolated from mice to KLK1 or KLK6 in the laboratory, and found that the enzymes promoted nerve cell loss. Dr. Scarisbrick is continuing to study the role of these enzymes in nerve fiber injury and hopes to find a way to target them with therapeutic strategies for people with progressive MS.

Repair and HDAC enzymes (Dr. Casaccia’s team): MS involves immune attacks against brain and spinal cord tissues, primarily myelin, the insulation that surrounds and protects nerve fibers. Several studies have indicated that, early in the disease, immature myelin-making cells – called, “oligodendrocyte progenitors” – are recruited to generate new myelin. A sufficient number of these cells is needed so that progenitors can migrate to the site of myelin damage and develop into myelin-making cells. Then, genes that instruct the formation of myelin components are activated and myelin is formed. In MS, this process fails. Dr. Casaccia is studying whether some molecules may inhibit the activation of the genes that promote myelin formation.

In this study, Dr. Casaccia’s team observed the gene activity during oligodendrocyte development in mice with damaged myelin. They found that enzymes called histone deacetylases (HDACs) were crucial to this process, particularly HDAC1 and HDAC2. Deleting these two enzymes impaired the differentiation of oligodendrocyte progenitors, that is, the process by which these cells develop a more specialized form or function. The team is studying how these findings might be translated into therapeutic strategies.

Saturday, October 18, 2008

On behalf of all those that live with Multiple Sclerosis, I want to thank each of you for your involvement and dedication to the cause.

We will beat this disease! No longer will careers be shortened by MS. No longer will care-givers struggle to fill the needs of both themselves and the person for whom they care. No longer will people have to think about their every move. No longer will there be a need to gain awareness of MS and no longer will there be a need to simply try to make people understand.

And maybe we’ll know why MS exists, what triggers it and why it’s progression can’t be predicted. Maybe we’ll know that there is (or for that matter isn’t) a genetic component. Or, why more women than men are stricken by MS. Why it is more prevalent the farther you go from the equator. We might even know why in some people it effects their balance, some their stamina, some their basic motor skills, some all of the above, and why some seem to lead (normal) productive lives interrupted only by occasional exacerbations that come and go leaving no long term evidence of MS’s flare-up.

MS is a giant question mark. It would be one thing to say there are more questions than answers. With MS there are really only questions, and the questions never stop coming and very few have answers.

So… What you’ve done is significantly help fund the cause. The cause of:· Research· Awareness of Multiple Sclerosis· Advocacy for MS patients, be it Independent Living, Health Care, Medical Insurance, or the Rights of the Disabled.· Peer self-help. Persons with chronic conditions helping others in the same situation.· Helping those with MS navigate the Government’s bureaucracy to get Social Security Disability or Supplemental Security Insurance approval.· Care-giver support.· Providing a place that people with MS can go to find someone that cares and understands, someone that they can relate to and that doesn’t judge them.

I hope to see each of you out there again next year! If you’ll have me I’d be privileged to be the team’s connection to Multiple Sclerosis, unless of course they find a cure! If that happens I promise to ride with you!

Finally, were it not for the National Multiple Sclerosis Society (funded by events like Bike MS) I’d be very unfulfilled. But, the MS Society gives me the opportunity to reach out to others with MS, advocate for our needs and rights while relating to my fellow MSers and educating the public.

Thursday, October 09, 2008

The Land Rover Miramar Bike MS Tour provides the opportunity for any cyclist to ride along the coast with cyclists ranging from beginner to expert, individual to team, and celebrity to family.

For the past few years, a tandem bicycle has made its way up the Torrey Pines Hill pedaled by team "Lloyd's Lagers" fearless leader, Lloyd von Sprecken, and his son, Todd. Lloyd has been inspiring riders with and without multiple sclerosis (MS) for many years. In honor of his commitment to a world free of MS, we created The Lloyd von Sprecken "Most Inspirational Rider Award."

The 2007 Lloyd von Sprecken Most Inspirational Rider Award was presented to Darren Martin. It all started when his short-term memory began to fail. His wife would ask him to go out and get some milk and he would get to the store a quarter-mile away and would have to call her and ask what he was doing there. Darren was diagnosed with MS in 1999.

Before he started getting any exercise, in 2005, he was basically in a chair all day because he was unable to work any longer. According to Darren he used to be in a depressed, miserable mood. Cycling changed his outlook. Darren has this disease, but it's not going to hold him back. He started going to the gym just to get some resistance going and he realized he can sit really well. Darren can sit on a bike and he can pedal, yet he can't stand for any length of time. Darren can't run, he can't jog, but he can ride a bike all day long.

Tuesday, October 07, 2008

...the Cucinotti Family at the 2007 MS Bike Tour...Christian, Giannina (diagnosed with MS in 2003), Peter, Joe, Kylie and Giovanna...please join us again in our fight against MS!

It is that time of year again, to begin fundraising in our battle to find a cure for Multiple Sclerosis. As we continue our battle we call on you all again for support. We understand that there are many great causes out there and we hope you will again consider ours. Our family has been blessed the past two years by all of you. On October 11th and 12th I will again ride my bike 100 miles from O.C. to San Diego to raise money in search of a cure for MS.Unfortunately for Giannina the disease continues to take its toll on her, although most of the time you wouldn’t know it. She is as beautiful as ever! She continues to have a great attitude while dealing with raising four kids during her sickness. Of course some days are better than others but little by little permanent deficits appear to be taking hold. Giannina’s right leg from the knee down has been 80% numb for the past eight months or so. It’s just part of the hand we are playing. Giannina does not complain and I try not to. Sometimes the reality of all this seems to be harder on me and the kids than it is for Giannina. We often feel so helpless. We just get to watch it all happen. Giannina continues her regiment of medication. The shots are painful and the meds still make her sick but we think it slows the process of the MS.That is why this time of the year is such a blessing for our family. We get to do our part in raising funds for research centers to continue to look for a cure for this awful disease. MS affects millions of people. We have joined those folks in their battle. We are again asking you to join with us in our struggle to find a cure by donating though my website. If you cannot donate this year we would love your prayers...and we thank you in advance for whatever you wish to do.Sincerely,Joe Cucinotti

"Alone we can do so little; together we can do so much."- Helen Keller

Monday, September 22, 2008

New data from the extension phase of oral laquinimod in relapsing-remitting multiple sclerosis (RRMS) demonstrated a significant reduction in the mean number of gadolinium-enhancing (GdE) lesions in both patients who switched from placebo to laquinimod and patients who continued with their initial laquinimod dose. In RRMS patients who switched from placebo to laquinimod, 52 percent reduction in the mean number of GdE lesions was observed (p<0.0007). The reduction was significant for both patients switching to high-dose (p<0.009) and low-dose laquinimod (p<0.03). In addition, the proportion of patients who switched to active treatment from placebo, and remained enhancing lesion-free, increased from 31 percent to 47 percent (p<0.012), further reinforcing the efficacy of laquinimod on magnetic resonance imaging (MRI) measured disease activity.

2008 World Stem Cell SummitEIN KEREM, Israel--(BUSINESS WIRE)--Hadassah University Hospital and Hadasit, the technology transfer company of Hadassah Medical Organization, announced today that scientists at Hadassah University Hospital have discovered a new application for human embryonic stem cells. They have demonstrated for the first time that transplanted neural cells derived from human embryonic stem cells can reduce the clinical symptoms in animals with a form of multiple sclerosis.

The findings of the study are published in an article titled “Neuroprotective Effect of Transplanted Human Embryonic Stem Cell-Derived Neural Precursors in an Animal Model of Multiple Sclerosis” in the Scientific Journal of PLoS One, a new, high-impact, peer-reviewed, open-access, online publication. Click here to access the article: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0003145.

The data presented in the report are the result of a long-term collaboration between Professor Tamir Ben Hur, director of the Neurological Department at Hadassah Hospital and Professor Benjamin Reubinoff, director of the Human Embryonic Stem Cell Research Center at Hadassah Hospital. Ms. Michal Aharonowiz and Dr. Ofira Einstein both from Hadassah, as well as Professor Hans Lassmann from the University of Vienna also contributed.

“Human embryonic stem cell-derived neural precursors were transplanted into the brains of mice with an experimental form of MS. The grafted human cells integrated in the mice brains and migrated towards the sites of inflammation. They suppressed the inflammatory process in the brain, and consequently protected the animals from demyelination and nerve cell extension (axonal) injury, which are the pathological hallmarks of MS,” said Professor Benjamin Reubinoff.

Multiple sclerosis, the most common cause of neurological disabilities in young adults, is caused by an inflammatory reaction of the patient’s own immune system against the myelin sheath that envelops the nerve processes. The destruction of myelin leads to the degeneration and loss of nerve cells and permanent neurological disabilities. MS affects 2.5 million people worldwide.

“We believe that the encouraging therapeutic effects in the rodent model of MS justify moving ahead to clinical studies. We also anticipate that the anti-inflammatory effect demonstrated in the pre-clinical study may be combined in the future with the use of other human embryonic stem cell derived neural cells to repair the myelin in the brain,” said Professor Reubinoff.

Friday, August 01, 2008

Additional Cardiac Monitoring for Patients on Mitoxantrone - from Heartwire — a professional news service of WebMD

Sue Hughes

July 30, 2008 — The FDA has issued an alert informing healthcare professionals about additional recommendations for cardiac monitoring of patients with multiple sclerosis (MS) who are treated with mitoxantrone (marketed as Novantrone and as generics) [1].

In 2005, the labeling for mitoxantrone was changed to recommend that left ventricular ejection fraction (LVEF) be evaluated before initiating treatment and before administering each dose of mitoxantrone to patients with MS. These changes were established in response to postmarketing and case reports in the medical literature that described decreases in LVEF or frank congestive heart failure in patients with MS who had received cumulative doses of mitoxantrone that were lower than 100 mg/m2.

Since that time, the FDA has received information from a postmarketing safety study that demonstrated poor adherence to these recommendations in clinical practice. This study used insurance-claims data and medical-record reviews to examine cardiac monitoring patterns in clinical practice. In this study, it was noted that four patients developed congestive heart failure 4 to 17 months after completing therapy with mitoxantrone.

Given the potential severity of cardiotoxicity and evidence suggesting poor adherence to the recommendations for monitoring cardiac function, the FDA is currently working with the manufacturers of mitoxantrone to remind healthcare professionals of the importance of adhering to the recommendations for patients with MS who are treated with mitoxantrone.

In addition, the FDA and the manufacturers are now advising that all patients with MS who have finished treatment with mitoxantrone receive yearly quantitative LVEF evaluations to detect late-occurring cardiac toxicity.

The FDA has issued the following recommendations for patients treated with mitoxantrone.

For All Patients

Assess signs and symptoms of cardiac disease with a history, physical examination, and ECG before initiating therapy with mitoxantrone. Perform a baseline quantitative evaluation of LVEF.

For Patients With MS

Patients with a baseline LVEF below the lower limit of normal should not be treated with mitoxantrone.

Patients should be assessed for cardiac signs and symptoms with a history, physical examination, and ECG before each dose. Patients should undergo a quantitative reevaluation of LVEF before each dose, using the same methodology for each assessment. Additional doses of mitoxantrone should not be administered to patients who have experienced either a drop in LVEF to below the lower limit of normal or a clinically significant reduction in LVEF during mitoxantrone therapy. Patients should not receive a cumulative mitoxantrone dose greater than 140 mg/m2. Patients should undergo yearly quantitative LVEF evaluations after stopping mitoxantrone to monitor for late-occurring cardiotoxicity, using the same methodology that was used for assessments that were done during treatment.

For Patients With cancer

The possible danger of cardiac effects in patients previously treated with daunorubicin or doxorubicin should be considered when weighing the benefits and risks of mitoxantrone. The presence or history of cardiovascular disease, previous or concomitant radiotherapy to the mediastinal/pericardial area, previous therapy with other anthracyclines or anthracenediones, or the concomitant use of other cardiotoxic drugs might increase the risk of cardiac toxicity. LVEF should be monitored regularly after the initiation of therapy in patients with these risk factors.

From Medical News TodayResearch published in Nature Neuroscience , electronic publication ahead of print) has shown that adult stem cells in mice that are developing into nerve cells can be redirected to turn into myelin -making cells by changing a single gene . This type of research may some day help repair the damage to myelin which occurs in multiple sclerosis (MS).

In people with MS the immune system can attack both myelin and myelin making cells (oligodendrocytes). Limiting the number of myelin making cells impairs the capacity to repair the damage to myelin. One potential treatment option currently being investigated involves encouraging immature stem cells that reside in the adult brain, called neural stem cells, to move to areas of damage and repair myelin.

When neural stem cells are grown in the laboratory scientists have been able to reprogramme them to develop into several different types of brain cells, including oligodendrocytes. This latest research which took place in The Salk Institute for Biological Studies in California sought to determine if it would be possible to repeat these experiments in the brain.

A gene called Asc1 which is associated with oligodendrocyte development was introduced into the stem cells in the brain and caused neural stem cells to develop into oligodendrocytes.

This study confirms that adult stem cells in the brain retain their ability to be converted to certain other types of brain cells. Further research is needed to determine the significance of these finding to myelin repair in people with MS.

Dr Laura Bell at the MS Society said: 'Finding a way to cause stem cells which are already present in the brain to repair damaged myelin is an attractive potential treatment option for people with MS. This is early research but it is an important step and we look forward to seeing how the work progresses.'

Sunday, July 13, 2008

Animal studies by University of Michigan scientists suggest that people who experience the same clinical signs of multiple sclerosis (MS) may have different forms of the disease that require different kinds of treatment.

The results, if borne out in further studies, point to a time when doctors will be able to target specific inflammatory processes in the body and more effectively help MS patients, using available drugs and new ones in the pipeline.

Since the 1990s, the treatment picture has brightened for people with multiple sclerosis in its most common form, relapsing-remitting MS. Beta interferon drugs and glatiramer acetate (marketed as Copaxone) have proved effective at decreasing the attack rate and suppressing inflammatory plaque development in many patients with MS. Yet why the drugs help some patients, but not others, has remained a mystery.

The U-M research team conducted the studies in mice that have a disease similar to MS: experimental autoimmune encephalomyelitis or EAE. The team found that different inflammatory chemicals, whose activity is linked to two different types of immune system T cells, could bring on the same paralysis and other MS-like signs. They also showed that drugs that block one of the inflammation pathways were not effective at blocking the other. The results, published online ahead of print, will appear in the July 7 issue of the Journal of Experimental Medicine.

"These two forms of disease differ in the specific anti-inflammatory agents that they are responsive to," says Benjamin Segal, M.D., the study's senior author and the director of the Multiple Sclerosis Center at the U-M Health System.

"We already know that some people respond better to the drugs beta interferon or Copaxone than others. Now we've shown proof that you can cause MS-like syndrome in mice due to qualitatively different types of inflammatory damage. As a result, these two kinds of inflammation likely require different approaches to treatment," says Segal. He directs the Holtom-Garrett Program in Neuroimmunology and is the Holtom-Garrett Family Professor of Neurology at the U-M Medical School.

Context:

MS is an inflammatory disease of the central nervous system believed to be autoimmune in nature. Certain cells in the body's immune system mount an inappropriate response against proteins in the nervous system, in particular myelin, the fatty substance that covers nerve axons. MS affects an estimated 2.5 million people worldwide. Symptoms, which vary widely, include numbness and weakness, incontinence, double vision, tremor, imbalance and pain.

In 85 percent of MS cases, patients begin with what is called a relapsing-remitting form of the disease. Initially, they have attacks in which they experience symptoms for a time, return to normal, then have attacks again. In the last 15 years, several beta interferon drugs and Copaxone have been effective in many patients at limiting the number of attacks. These drugs also can also decrease damage in the brain as visualized on MRI scans.

Research details:

Segal's research team injected one group of mice with an immune system T helper cell, Th1, long believed to play a role in MS, and another group with a T helper cell, Th17, whose potential role in MS has recently come to light. They measured the activity of specific inflammatory agents that are induced by each type of T cell as the immune system mounts its misguided attack on the myelin sheaths of nerve cells.

Both groups of mice developed similarly severe and rapid paralysis. But the researchers found clear differences in the inflammatory agents involved, called cytokines and chemokines, and in the resulting damage to the central nervous system.

Mice injected with Th1 cells showed a pattern of central nervous system inflammation that resembled that of common MS, with lesions filled with macrophages, a type of immune system defender cell. Mice injected with Th17 cells, however, had lesions filled with another immune cell type, neutrophils. In these mice, inflammation reached deep in central nervous system tissues and in the optic nerve.

In both groups of mice, the scientists tested the effects of neutralizing antibody drugs similar to drugs being developed against autoimmune diseases in humans. Some of the drugs inhibited disease in the Th17 mice, but not in the mice receiving Th1 cells. Other drugs were effective against both types of disease.

"That's our proof that these really are different mechanisms of disease," says Mark Kroenke, the study's first author and a Ph.D. student in immunology at U-M.

Implications:

It's not yet known whether the same differences will prove true in people with MS. But the study suggests the need to develop drugs tailored to affect distinct inflammation pathways that might drive different forms of relapsing-remitting MS.

"We speculate at some point being able to identify and measure active inflammatory agents in patients, and to develop customized profiles that would help predict what treatments will be effective," Segal says.

In addition, Segal says, the findings may aid the search for effective drugs for two difficult-to-treat diseases closely related to MS: neuromyelitis optica, which affects the optic nerve and spinal cord, and opticospinal MS, most common in Asia. The pattern of inflammation the team saw in the Th17-injected mice resembled the pattern in these variants of MS.

Other authors include: Anuska V. Andjelkovic, Ph.D., U-M Department of Pathology; and Thaddeus J. Carlson, Ph.D., University of Rochester School of Medicine and Dentistry.

Segal is on the scientific advisory board of the National MS Society, http://www.nationalmssociety.org/index.aspx

This work was supported by grants from the National Multiple Sclerosis Society and the National Institutes of Health.

Sunday, June 29, 2008

At this moment in time we have been given great fortune. Our generation above others has been bestowed a deep understanding of the world and the power to do so much. And if we fail to make the most of this moment - if we convert hope and understanding into isolation - if pausing merely leads to complacency - then history can rightly point its finger at each of us.

Action does not have to mean “anything goes”. It need not be morally corrupt. Given a choice, most people want to be thought of a winner and in the right way. We all want to be part of a successful endeavor. We all want meaning, with the freedom to achieve success, not just to survive. We all want the best from life for ourselves, for our families, colleagues, community and society.

Achieving financial objectives and having fun while doing so is one of the fundamentals of why we participate. Beyond the traditional value fun takes on a greater sense. Fun also means enjoying the challenge of involvement, contribution, accomplishment, personal enrichment and satisfaction.

We are identified by a social and ethical balance beyond isolated entities. It’s important not only to have a clear understanding of the “Mission” and role of the NMSS, but also an intense sense of performance. There’s more to performance. A team will provide a wider view- expecting each member to give time and talent to the common cause. Truly “winning” or “success” is from contribution transitioning into a passion to perform. It is this passion that fuels the team and ignites will.

Whatever form winning or success takes on also has to serve the well being of the team. It must also include a process of continual self-improvement. Not as a creed or fixed promise but an attitude. It is about pride, with people knowing that they are pushing themselves to achieve the best that they can. Having genuine interest and excitement in the team’s actions are as important as actual achievement.

In the final analysis, the value of existence is not dependent on crisis - nor should it consist only of dramatic victories. However un-dramatic the pursuit, it must go on. The challenge- to do what we can to create a world free of MS, to be sure is real. Our concepts and definition of this challenge may be very different, but when we give it our all and to the best of our ability it shouldn’t matter what anyone thinks. What matters most is who we are and our expression of life.

For eight years Team Mitsubishi has been part of the “Movement” and we have rallied to the challenge. It started with four riders and every year since we have been in the Top 25 of teams in money raised. We have transitioned into a great group of dedicated people who also enjoy participating. For 2008 the team has been acknowledged as the “Best (Team) Promoting the Mission.” (Of the NMSS)

A few years ago, you spoke to our organization, Cal Neuro Alliance, at our annual conference in Sacramento. I was very impressed with what you had to say and how you said it. The next day, while at the Capital building, our Advocacy team bumped into you in the hall and your graciousness was impeccable. I am a person with multiple sclerosis and my older brother also has MS.

As I am sure you are aware, SB 1198 is scheduled to be heard in the Assembly Health Committee tomorrow. I urge you to support this important bill which would require health insurers and health plans to offer coverage for durable medical equipment (DME), without a separate benefit cap, as part of their group contracts and policies. This is an important bill that will help disabled people who depend on durable medical equipment to live independent lives.

Multiple sclerosis (MS) is a chronic and often disabling disease of the central nervous system that typically is diagnosed in young adulthood. MS can lead to physical, cognitive and psychiatric symptoms, as well as functional limitations. My brother and I have all those symptoms between us. For many people living with multiple sclerosis, durable medical equipment - especially wheelchairs, scooters and walkers - is critical to their ability to live independently. My brother would be significantly impacted in his personal life if he did not have access to the correct DME. However, private health plans and insurance coverage usually puts lower caps on DME than they place on other medical services. SB 1198 will address this gap in coverage by preventing group health insurance plans from placing special coverage limitations on DME and providing a much needed lifeline for individuals with MS to function at the highest level possible at home, at work, and in the community.

I appreciate your efforts on our behalf. I urge your support of this legislation.

Sincerely,

My email to the author of this letter follows:

First, let me say I am addressing all those addressed in your previous email. Second, I remember first hand and very precisely the graciousness afforded by Assemblyman Dymally during our chance encounter. As the recipient of his gracious deference (it was deference I didn’t expect or solicit) to a man in a wheel chair, I can only echo your praise.

I feel I know without question where Assemblyman Dymally will come down on this issue. The Assemblyman demonstrated all things good during that chance encounter! He took the extra step to help his fellow man! It really didn’t take a lot of effort, but in the busy hustle bustle environment that is the California Capitol Building he took the time to pause and assist his fellow man!

Well done! I commend you for remembering and using that event as a springboard in a letter several years later.

Monday, June 23, 2008

Good news for people with relapsing-remitting MS: a small clinical trial has shown that a drug used to fight cancer may reduce disease activity and disability in people with aggressive forms of the disease. According to our article about the potential new MS treatment, when the nine study patients took the cancer fighting immunosuppressant drug cyclophosphamide (Cytoxan or Neosar) intravenously for four consecutive days, they experienced long stretches of symptom-free remission. At the 23-month follow-up exam, study participants experienced on average a 39.4 percent reduction in disability, 87 percent improvement on physical and mental function tests and a decrease in the average number of brain lesions from 6.5 to 1.2.

"High-dose cyclophosphamide (sold commercially as Cytoxan or Neosar) induced a functional improvement in most of the patients we studied," wrote lead author Chitra Krishnan of the Bloomberg School of Public Health at Johns Hopkins University in Baltimore, Md. "In many of those patients, the functional improvement was sustained through the length of the study (up to 24 months) despite the absence of any immunomodulatory therapies beyond the initial high-dose cyclophosphamide treatment," she concluded.

Cyclophosphamide has been used in combatting a number of cancers, including lymphomas, multiple myeloma, leukemia, mycosis fungoides, neuroblastoma, ovarian carcinoma, retinoblastoma and breast cancer. The drug affects the function of immune cells known as T and B cells.

Multiple sclerosis is an inflammatory disease in which the protective coating covering nerve cells degenerates. Autoimmune dysfunction -- in which the body attacks itself -- is believed to be linked with MS.

"This immunoablative regimen (an immune-related therapy involving the destruction of a cell population) of cyclophosphamide for patients with aggressive MS is worthy of further study and may be an alternative to bone marrow transplantation," the study authors concluded.

Monday, June 09, 2008

Drug manufacturer Novartis has reported that two people with MS taking the oral drug fingolimod (FTY720) in clinical trials experienced problems with infections, leading to a fatality in one case. The firm said the role of the medicine in the cases was unclear and that the trial will continue.

Independent experts recommended that clinical trials with the drug should continue as planned.

Novartis said it was in talks with health authorities and experts to try and improve awareness of the risks of infections and how these may be reduced.

"Both cases involved confounding factors, including the use of very high doses of steroids in the first patient and the delayed use of antiviral therapy in the second patient," it said.

The company said FTY720's role in the cases was unclear but could not be excluded, since its mechanism of action leads to suppression of the immune system, which can increase the risk of infection.

Novartis has previously stated that it expects to submit the once-daily therapy for approval before the end of 2009 with a view to launching the drug in 2010.

Friday, May 23, 2008

My previous post involved an email I sent to the President on June 6, 2007 and the susequent response on May 15, 2008. Though I knew that the National Multiple Sclerosis Society had conducted a Public Policy Conference in Washington earlier in the month and that there had been a hearing regarding Stem Cell Research I simply failed to put it all together. The timeline and subject matter of all these events screams, "Not a coincedence!" Here's a brief synopsis from the MAY 20 MSACTIVIST blog post:

Society Chairman Testifies Before Congress in Support of Stem Cell Research

On May 8, Weyman Johnson, the National MS Society Chairman of the National Board of Directors, provided testimony to Congress in support of embryonic stem cell research.

Restating the timeline:

June 7, 2007 an email is sent to president@whitehouse.gov supporting the newly passed Stem Cell Therapy Enhancement Act of 2007.

Shortly thereafter, on June 19, 2007, President Bush vetoed the legislation. No attempt was made to overturn that vetoe, and there was no response to the June 7 email.

Eleven months later, on May 8, 2008 the Chairman of the Board of the National MS Society testifies supporting Embryonic Stem Cell research.

One week later, on May 15, 2008 a letter is drafted in response to the June 7, 2007 email! I have to ask,"Why anyone, especially the White House, should bother to reply to an email after that long?" And, "How deep into the White House email archives did they have to dig to stumble into my original email?" My belief is that someone checked the archives for emails involving both, "Stem Cell research" and, "Multiple Sclerosis" and out came a boilerplate letter! Hmmm, I wonder if anyone else got the same letter?

Well, MS Awareness IS happening! AND Big(gest) Brother must be watching!

Tuesday, May 20, 2008

I just noted that the Stem Cell Therapy Enhancement Act of 2007 has passed both Houses of Congress and is bound for your desk. Mr. President please do not veto hope! Hope for the millions who either today or in the future will confront chronic and often times life-threatening diseases.

In the past you have identified yourself as a compassionate conservative. Don’t overlook compassion for those of us that walk this earth today. And please remember this is a right-to-life issue for many of us suffering from numerous chronic progressive and debilitating diseases. The embryo in question will never be implanted in a mother’s womb, it will never be adopted, it has NO FUTURE! By the stroke of your veto pen you render those embryo totally useless. However, by signing this legislation that embryo may provide science with one small step toward solving the mysteries of some of medicine’s most elusive disease treatments.

Mr. President, I live with one of those diseases. And though the genetic connection has never been proven I have to seriously consider how I, my half-sister and our aunt all contracted Multiple Sclerosis. I look at my grand-children and wonder, are they destined to confront this disease as well?

Mr. President, hope rests in your hands!

Sincerely,

Frank Austin

Then yesterday, May 19, 2008, I received a written response, the letter read:

THE WHITE HOUSEWASHINGTON

May 15, 2008

Mr. Frank Austin XXXXXXXXXXXXXX Tustin, California 92780-6941

Dear Mr. Austin:

Thank you for writing to President Bush about the complex issue of human embryonic stem cell research. We appreciate hearing your views.

In making a decision on the use of Federal funds for human embryonic stem cell research, the President received advice from scientists, scholars, bioethicists, religious leaders, doctors, researchers, members of the Congress and the Cabinet, and the American people. He spent a great deal of time studying and reflecting on this issue. The result is a balanced policy shaped by deeply held beliefs regarding both the sanctity of human life and the potential of science and medicine to help humanity.

The President’s policy has allowed important research to go forward without using Federal funds to encourage the further deliberate destruction of human embryos. There is no ban on human embryonic stem cell research, and the policy places no limits on the research itself. In fact, this Administration became the first to make Federal funds available for this research -- yet only on stem cell lines derived from embryos that had already been destroyed at the time the President announced his approach to embryonic stem cell research.

The Administration’s investment in stem cell research has expanded studies using alternative types of human stem cells -- drawn from adults, children, umbilical-cord blood, and other non-embryonic sources which can he drawn with no harm tothe donor. This research using non-embryonic stem cells has already Jed to treatments for thousands of patients and continues to show great promise.

In addition, researchers are developing new techniques to produce stem cells similar in nature to those derived from human embryos, but without harming or destroying embryos. As the President has said, our challenge is to harness the power of science to ease human suffering without sanctioning the practices that violate the dignity of human life. President Bush believes that America’s scientists have the ingenuity and skill to meet this challenge.

For more information on President Bush’s policy on stem cell research, you may wish to visit the White House website at whitehouse.gov/stemcell. Thank you again for writing. President Bush sends his best wishes.

Sincerely,

Nancy Theis Special Assistant to the President and Director of Presidential Correspondence

Friday, May 09, 2008

Several years ago I attended a MS research symposium where bone marrow transplants for a group of MS patients was mentioned. I was genuinely interested in this research because it just made sense to me. Then this past Wednesday I happened to be scanning through the Multiple Sclerosis RSS feeds I subscribe to and one of the news items was:

BETHESDA, Md. (Reuters) - An experiment that went wrong may provide a new way to treat multiple sclerosis, a Canadian researcher said on Tuesday. Patients who got bone marrow stem-cell transplants -- similar to those given to leukemia patients -- have enjoyed a mysterious remission of their disease.

Dr. Mark Freedman of the University of Ottawa is not sure why. "Not a single patient, and it's almost seven years, has ever had a relapse," Freedman said

Tuesday, May 06, 2008

On September 1 of this year, it will become illegal to dispose of sharps in the garbage. To my knowledge, OC does not have an integrated policy for sharps disposal for private users (diabetics and others who must use needles for their prescription medications). Other counties in the state have programs in existence already. What does OC do for this need? Is there a program in existence or is there one being developed?

Most hospitals, doctors, etc. will not accept these used needles. What should a person like myself do? I do a self-injection every day for management of my Multiple Sclerosis and want to dispose of my needles in the correct manner. I know there are countless others who face the same issue on a daily basis, people who cannot make a special trip to a drop point because of disability.

Please let me know what your plans are for OC. If I can help in any way, offer any guidance from the community of users, please let me know.

Thursday, May 01, 2008

Thank you for contacting my office to express your views. I believe that all citizens should become involved in the legislative process by letting their voices be heard, and I appreciate the time and effort that you took to share your thoughts with me. One of the most important aspects of my job is keeping informed about the views of my constituents, and I welcome your comments so that I may continue to represent California to the best of my ability. Should I have the opportunity to consider legislation on this or similar issues, I will keep your views in mind.

For additional information about my activities in the U.S. Senate, please visit my website, http://boxer.senate.gov. From this site, you can access statements and press releases that I have issued about current events and pending legislation, request copies of legislation and government reports, and receive detailed information about the many services that I am privileged to provide for my constituents. You may also wish to visit http://thomas.loc.gov to track current and past legislation.

Again, thank you for taking the time to share your thoughts with me. I appreciate hearing from you.

Thank you for contacting me regarding multiple sclerosis. I appreciate hearing from you and welcome the opportunity to respond.

Since coming to the Senate, I have strongly supported funding for biomedical research at the National Institutes of Health, Centers for Disease Control and Prevention, and through the Department of Defense's Congressionally Directed Medical Research Programs. I believe these efforts hold tremendous promise to produce new treatments and possible cures for a myriad of conditions and diseases, including multiple sclerosis. I am pleased to inform you that I am a member of the Senate Multiple Sclerosis Caucus. Please be assured that I will continue to work to raise awareness and hope that a cure will soon be found for this disease.

Again, thank you for contacting me. If you should have any further comments or questions, please feel free to contact my Washington, D.C. office at (202) 224-3841. Best regards.

Sunday, April 27, 2008

I am writing this letter to make you aware of a problem that I had. I experienced the problem this morning on Route 37, south bound leaving 1st and Euclid, at 10:24am, the bus number was 5520.

After I boarded the bus on my scooter, the coach operator put a restrain belt across the back of my scooter only. Not straps securing the armrests, which is normal. No front strap was attached to the tiller, or front control mast, which is also normal.

At about 10:35am the bus came to a very sudden stop. My scooter, with me in it, rolled forward, and tipped. My scooter is a 3 wheeler and the one restraint belt, which the driver had put across the back, did not restrain the scooter. The scooter and I were partially tipped over sideways.

I had to wait until the driver stopped to be righted back into a correct, safe position. Another passenger had to come over to help put me back into an “all wheels on the floor” position. Then, after the coach stopped at the next stop, the driver came back and finally secured my scooter properly.

Being thrown forward and hanging in midair, was not the type of ride I expected on this day.

Coach operators need to secure scooters and or wheelchairs properly with a 3-point method that will ensure their user’s safety.

Monday, April 14, 2008

As of 2:00pm April 14 team, "Frank" had generated $2559.00 in donations. Considering that my initial goals were $500 for myself and $1000 for the team, that ain't half bad! And we've got more to be registered!

Everyone out there in traffic should be aware that the, "Three Amigos" are on the prowl! One of them is a particular menace to society when he wheels around on a personal mobility device most commonly referred to to as a scooter. DMV can pull a person's drivers license but I've yet to hear of a comparable agency intent on protecting the general public from out-of-control disabled scooter operators!

I hesitate to raise that issue to either the California State Assembly or Senate. Imagine the bureaucratic nightmare that might produce.

Friday, March 07, 2008

Monday:Commit to seven days of action and take simple daily actions throughout the week that make a difference

Tuesday:Send an action alert to your federal representative asking for an increase in MS research

Wednesday:Watch the Moving Forward film festival debut on Second Life

Thursday:If you haven’t committed to seven days of action, there is still time to get involved

Friday: Check out what our corporate partners are doing to support the MS movement through our new Movement Marketplace

Saturday:Sign up for a Bike MS or Walk MS event – if you already have, ask two friends or family members to join you!

Sunday:Thank you for moving us closer to a world free of MS

Personally, I'll be in Sacramento CA March 10-12 attending the California NeuroAlliance Conference, visiting State Assembly Members/Senators and supporting (or maybe even opposing) legislation that impacts the lives and caregivers of those with a wide range of Neurologic conditions.

Then, on the 14th I will attend an Emergency Preparedness Workshop sponsored by the California Volunteers, the newest cabinet level department on the Governor's staff.

Thursday, March 06, 2008

Senator Byron Dorgan (ND) and Senator Orrin Hatch (UT) have agreed to serve as the co-chairs of the new Congressional Multiple Sclerosis Caucus in the U.S. Senate. We are confident that the leadership of these two prominent Senators will help raise awareness and provide education about MS on Capitol Hill. Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions. Once the Senate MS Caucus is formerly announced, you will be able to help recruit your Senators to join.The House MS Caucus is growing significantly — now 72 members. View the most up-to-date list in the left column of the MS Activist Blog.

Tuesday, March 04, 2008

I am pleased to forward this message to all of you regarding the recognition our chapter recently received at the National MS Society’s Programs Conference. Due to the tremendous activism and advocacy over the prior year, the Pacific South Coast Chapter has won the Chapter of Excellence in Advocacy Award. Great work everyone and cheers to the year ahead!! I am truly honored to be a part of this team.

Monday, March 03, 2008

Getting the job doneVolunteer with multiple sclerosis finds a way to helpBy ERIKA M. TORRESSTAFF WRITER

Tustin resident Frank Austin, a volunteer who has multiple sclerosis, was honored by the National Multiple Sclerosis Society's Pacific South Coast Chapter as its 2007 Activist of the Year.

According to the MS Society, Austin's selection was based on his efforts to assist disabled persons by serving on various committees, as well as his role as leader of a self-help group for men with MS.

MS is a chronic and disabling disease of the central nervous system with no known cure.

Austin worked for office equipment companies for more than 20 years before his diagnosis with MS in 1997. He and wife, Corinne, have been married for 25 years. They have three grown children.

Q:Why do you think you were honored?

A:I was involved in a lot of stuff last year. I do think we did a tremendous job with our advocacy work with OCTA. A year ago, their paratransit service was in horrible shape.

What they've done now is put together a real time system; drivers are now online, they're doing everything in real time. They're keeping track and they know where all their buses are every day.

I think OCTA and their contractor did a tremendous job of getting it together, but I think a part of it was we were standing there and they had to look at us in the face.

Q:What has caused you to become so actively involved?

A: What else am I going to do? (laughs) I have MS. I am on Social Security disability. I haven't worked for five years. Obviously I wanted to do something I care about and I'm a bit of a workaholic and this seemed like an obvious thing to do. It's now my life.

Q:How has MS impacted your life and how do you deal with it?

A:Well it's taken me out of the workforce. I have some problems with the ability to stand. I get fatigued. My mobility is limited to about 200 feet to 200 yards depending on the day. I've been fortunate; my wife is tremendous.

This disease treats everyone different. I see a lot of people who just withdraw and go into their shell and they just kind of wither. Their self-esteem is gone and they just can't stand up to it anymore. I refuse to be that way. I'm going to do things as long as I can and when I can't do it the way I did it before I'll try and find another way to get the job done.

Saturday, March 01, 2008

The Honorable John CampbellHouse of Representatives1728 Longworth House Office BuildingWashington, DC 20515-0548

Representative Campbell:

Please support a $15 million appropriation to the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations to fund multiple sclerosis research. I ask that you show your support by signing the Dear Colleague letter regarding this issue being circulated by Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D.(R-TX).

MS is a chronic, unpredictable, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause is still unknown and there is no cure. Current medical treatments are not effective for many people and cannot be tolerated by many others.

I am a Vietnam Veteran who exhibited my first MS symptoms within 10 years of my return from Southeast Asia.

Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk of developing MS. A study in the Annals of Neurology, for example, identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The number of service-connected cases was a significant increase from previous studies. And an epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS.

Dr. Mitch Wallin, Associate Director of Clinical Care at the VA's MS Center of Excellence-East, says that "current evidence points to an environmental trigger initiating the disease in a genetically susceptible host. The association of neurologic disease and GW (Gulf War) service may be related to a variety of potentially hazardous environmental exposures that were present in the war theater."

The DoD has an obligation to fund MS research related to service during the Gulf War. Not only would this research benefit our Gulf War veterans, but would also benefit all those who live with multiple sclerosis and related diseases.

I ask that you support MS research by signing Congressmen Carnahan and Burgess' Dear Colleague letter and joining us in our request for $15 million from the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations. Thank you for helping us move closer to a world free of MS.

Thursday, February 21, 2008

The word seems to be used a lot by people, oft times patients, living with Multiple Sclerosis. I am not one of them! One definition of cope:

Dictionary: cope (kōp)

intr.v., coped, cop·ing, copes.To contend or strive, especially on even terms or with success: coping with child rearing and a full-time job.To contend with difficulties and act to overcome them

Contend, strive acting to overcome all sound good but passive! It seems to say, "I'll live with MS" or "I'll try" It's a reaction to the disease not a means of meeting it head-on. To cope is simply not an action verb!

Rather than set back and cope with all things MS; I choose to get involved, evolve and adapt! I guess that is action vs reaction!!

At the end of the day, if I've adapted or evolved I have something to take into tomorrow. If I simply coped with the day, do I?

Wednesday, February 20, 2008

1. Lots of time and effort spent trying to influence the Orange County Transit Authority Board of Directors about the Counties' Paratransit service. The final result was that the position we took prevailed. The system is back on track and I think the model is one that is worthy of attention.

On time performance and the missed trip percentages are within contract specifications.

While some problems do still exist, I believe that some of the actions the OCTA has planned will really solidify the service's performance.

I have to praise the OCTA and Veolia Transportation staffs for their efforts. And I have to commend the OCTA Board of Directors for listening and acting on the concerns of Orange Counties' disabled and Seniors.

2. Three members of our Chapter (myself included) managed to be appointed to the Governors Office of Emergency Services Standardized Emergency Management Specialist (SEMS) committees representing the needs of the disabled in the event of an emergency.

First I simply have to say, "Wow that's huge!!" Think of the difference we can make. Let's face it, those of us with impairments think about things a different way. We are getting the opportunity to be in on laying the foundation rather than being an afterthought of the plan(s).

I find myself looking at disasters and emergencys through a whole different set of filters now. Following the Southern California wildfires of last fall (one of which started within 5 miles of my home); and having been in the California State Operations Center (just a coincidence) on the 2nd full day of the event I am in awe of the whole process. I wonder just how ready any of us are for the next big disaster. Big brother may not and probably will not be able to take care of us. Can we fend for ourselves? Have you cultivated your own personal network of caregivers to include you in their exit strategy!